Mother with stage IV lung cancer beats the odds

Jessica Steinberg was diagnosed with ALK-positive non-small cell lung cancer five years ago, at age 39. (Photo Courtesy of Jessica Steinberg)

Five years ago, Jessica Steinberg was training for a marathon when she found herself in a bit of trouble running up a hill: just some shortness of breath, albeit nothing worthy of alarm. She chalked it up to not being in good enough shape and vowed to push herself harder.

Not too long after that, after suffering an unrelated injury, she went for a chest x-ray. The results prompted physicians to book her for an emergency CT scan. After that, an emergency biopsy.

The news came down less than a week after the initial x-ray, and it was not good: at just 39 years old, Steinberg had lung cancer.

“Honestly, the first thing I thought when they told me was, ‘Are you freaking kidding me?"” she recalls. “At that point, they thought it was a stage I localized tumour, and that they would go in and do a lobectomy. They’d remove part of my lung, and that would be it.”

But things didn’t turn out that way. Surgeons struggled to find clear margins around the tumour, and the cancer turned out to be far more diffuse throughout her lungs than they had initially thought. Multiple lymph nodes tested positive. They revised her cancer’s staging to IIIB, and she underwent both chest radiation and chemotherapy.

It was a challenging time for Steinberg, a mother of two boys who lives just outside of Portland, Oregon. She was a single parent who had only recently filed for divorce. And she knew that her kids, who were in kindergarten and third grade at the time, needed her to remain a strong, stable presence in their lives despite all that was going on.

“In the beginning, when I thought it was this localized tumour and I was just having surgery, I told them I had to have surgery because there was something in my chest that didn’t belong, and they were just going to take it out,” she says.

It was a conversation that evolved as the treatment and the prognosis became more serious.

“I presented it with a lot of hope – I’m not going to die, I’m not going to leave you – and I figured if there came a time that that wasn’t true anymore, I’d deal with it then,” she recalls. “I didn’t want to plant that in their heads. I did tell them, ‘You probably heard cancer, and that’s a scary word. But we’re going to get through this.’ And then I made the one rule that we had to find joy and humour in every day.”

It was a conversation that wasn’t going to become any easier in the short term. Chemotherapy failed, and the cancer continued to grow. Now classified as stage IV, it had spread to her brain and bones.

Her doctor suggested she get her affairs in order. But she wasn’t ready to give up. She began researching her type of cancer – non-small cell lung cancer. She learned how to navigate PubMed and found out about some encouraging developments in lung cancer research.

Soon afterward, a breakthrough: she tested positive for the genetic biomarker known as ALK, which ultimately meant she was a candidate for new drugs designed to target the specific genetic mutation causing her cancer. Before long, she learned of a clinical trial for a targeted cancer therapy that was taking place not to far from her home, and signed herself up.

It turned out to be a game-changer. Her body responded to the targeted therapy, which all but eliminated her cancer. Now, at 44 years old, five and a half years after her initial diagnosis, Steinberg says there is no measurable cancer in her body.

“I’ll never be cancer-free; I have stage IV cancer. I’ll live with it forever. I’ll be on treatment forever,” she says.

“This treatment’s working for me, but at some point, the cancer may figure out a way to beat it. But I am not scared of dying anymore – I live with it more like a chronic disease now than a terminal disease. And aside from living with cancer, I have a pretty normal life.”

Steinberg’s story may seem miraculous, but it’s actually becoming increasingly common. Over the past decade, researchers have developed a variety of targeted therapies that have proven to be remarkably effective against certain types of cancer. Their research has changed oncologists’ understanding of how cancer forms and spreads in our bodies, which in turn has informed their ability to prescribe more effective courses of treatment.

“We used to think of lung cancer as two major subtypes – non-small cell lung cancer and small cell lung cancer,” explains Dr. Parneet Cheema, a medical oncologist at Sunnybrook Odette Cancer Centre in Toronto. “But what we are realizing now is that, particularly with non-small cell lung cancer, it’s most likely a collection of discrete cancers based on distinct genetic changes, or biomarkers.”

Cheema acknowledges that targeted therapies are only available for a small subgroup of patients: those eligible amount to about 20 per cent of all patients with non-small cell lung cancer. But she stressed that, while the overall five-year survival rate remains low (just 17 per cent, according to statistics from

Lung Cancer Canada), the outlook has improved considerably for lung cancer patients in recent years with the advent of these targeted therapies, as well as a more personalized approach to conventional chemotherapy.

In the meantime, both Steinberg and Cheema stress the need to change some of the negative perceptions around lung cancer. This refers to what Dr. Cheema calls “therapeutic nihilism,” wherein the discouraging overall statistics on lung cancer survival can lead to exaggerated pessimism about the availability of effective treatments. But it also concerns the stigma that continues to cast a shadow over lung cancer patients: the misguided belief that it is a “smoker’s disease,” both self-inflicted and preventable.

Steinberg, a lifelong non-smoker, considers this characterization to be as inaccurate as it is offensive.

“I don’t think people are to blame for the disease that befalls them,” she says. “But it’s not just a smoker’s disease. The biggest risk factor for lung cancer is having lungs. We all have them. We’re all at risk.”

The underlying message is simple: while the outlook for someone facing a lung cancer diagnosis has improved, patients need to educate themselves about their options. They need to have informed conversations with their doctors, ask about biomarker testing, and find out about clinical trials for any potential new treatments that have yet to become widely available.

As for Steinberg, she’s looking forward to the future. Over the course of her treatment, she set small benchmarks for herself. First, it was to live to see her kids through first grade. Then, it was high school.

These days, she’s setting her sights a little further down the road: one day, she’s going to meet her grandchildren..